The road to full recovery: school, exercise, appetite, relapse-prevention and the rest

This is a section from Chapter 10 of ‘Anorexia and other eating disorders – how to help your child eat well and be well’

How do we deal with school or everyday challenges in the early days, and how do we return to normal after the worst is over? How do we prepare our children for independence? What does the future hold?

What to do about school?

Should your child go to school, or should you keep him at home while he’s unwell? So much depends on his state of health, whether there is support to ensure he eats while at school, and whether school will reduce or increase his emotional turmoil.

When our daughter’s mood was very low, we saw school as a welcome boost for her. Yet I imagine that at the time, she thought and worried about food every minute of the day. Some of our clinicians suggested that keeping up appearances in school might be quite stressful for her: during our first case conference in hospital, they stated that the priority was to help her feel secure at home, not to get her to school.

There is of course the worry about your child falling behind in his studies. Health and recovery are the priorities, but it’s worth noticing if you’re at all stressed at the thought of missed academic opportunities and giving out confusing messages.

What can you do about school right now? I’ll tell you more about how we managed schooling in the hope it helps you clarify your options. Bear in mind that when my child was ill she was only ten and still in primary school.

School and clinicians in partnership

On the ward where my daughter spent nearly a year, there was a teacher whose role included liaising with the school. With just an hour of study a day, my child kept up without any problem. For you, the equivalent might be home schooling. It’s a good solution for some children.

When my daughter had recovered her physical health, the ward organised for her to attend school for increasing lengths of time. To our amazement, our council readily paid for a taxi to take her there and back. All the same, school was not a priority. My daughter had to be in the ward for the various therapy sessions scheduled throughout the week.

Early on there had been one isolated incident where a teacher was planning on excluding my daughter from an outing for fear she would somehow ‘contaminate’ the others. The problem was soon sorted, in no small part thanks to the work of our specialists, who held meetings with school staff to educate them about the illness.

At various times, several teachers, including the Head, turned up at hospital case conferences, keen to support my daughter as effectively as they could. It was heart-warming to see the pride they took in their role in my child’s recovery.

Meals during school hours

Our clinicians did a great job of helping the school understand their role around meal supervision. The Head set up a rota of trained staff so that there was always a competent adult overseeing snack time and lunchtime. Prior to this I had taken my daughter home for lunch, or fed her in the car or even in a private room in the school, but having staff do it made it much more manageable.

Because our child was so young, it was relatively easy for her to accept that for a while she would eat with a member of staff, possibly with a few friends of her choice. She could eat more easily with school staff than with me, because, she said, she didn’t want to look weird or stupid in front of strangers. She loved some of the staff members but her overarching memory of this period is that she hated it.

After a few months like this, as my daughter got better, we phased out the supervision because we were reasonably certain she would eat without it. A catering woman in the dining room took it upon herself to keep an eye on her, and I still feel tearful thinking about her quiet and discreet care.

At this stage, our agreement with our daughter was that if she really couldn’t manage part of her food, she should tell us. If it was part of a packed lunch, she should bring it home, and we would not blame her or get cross. This would have been a gift to anorexia a few months earlier, but by that time our kid had motivation not to go down the eating-disorder spiral. On a few occasions, she told us that she hadn’t eaten food that had been damaged in transit (a squashed sandwich, a bruised banana), and this was usually confirmed by school staff, showing that their level of supervision was pretty good.

For a while I was in touch with a mother whose school absolutely refused any involvement with her daughter’s meals, saying they didn’t have enough staff. As a result the girl could only go to school two days a week, when grandparents were available to feed in the car. It’s pretty common for schools to refuse to cooperate, and very stressful for the parents at a time when they need teamwork more than ever. I suspect the blocks on the school’s side come from fear. Fear of the illness, fear of the child’s behaviour, fear that the support required might be too demanding on resources.

I imagine that staff in schools all over the world have a desire to contribute to a child’s and a family’s well-being, and that if this is not what you’re seeing, the key to removing obstacles is communication. Engage key teachers in understanding the issues and priorities for your child. Discuss how they can support her with study, friends and eating. Here are some examples of measures that have helped some families:

A member of staff is appointed to oversee the child’s well-being and to communicate with parents.

Staff keep a discreet eye on the child’s eating and report back to the parents.

The child knows she is being observed in the dining hall and that staff will report back to the parents.

The child eats in a separate area, with friends, under the supervision of a member of staff.

The school regularly provides parents with a printout of food bought in the dining hall.

A friend of mine, whose children go to high school in France, tells me that pupils cannot bring packed lunches and that if there was not enough food on their tray the staff would react immediately. Wow!

More from me on this topic: A list of issues for parents to discuss with the school, on here

School as an incentive

You know my views about rewards and punishments. It is incredibly tempting when your child isn’t eating breakfast to snap, ‘OK then, you can’t go to school!’ One of our therapists would hear about our daughter’s week and take on the bad cop role: ‘No playground for you. I’m going to phone the school and ask for you to sit in the nurse’s room during break time.’

There was no sense in making my child sit in the nurse’s room, while in the playground her group of friends sat on their coats and chatted. We should be clear about whether we’re addressing a real health need or trying to provide incentives. If the latter, our children are very likely to experience our decisions as punishments.

On the other hand I was very aware that if my daughter hadn’t been eating or drinking, she was too unwell to go to school, or she should preserve the few precious calories she’d ingested. But even that last argument was debatable, as we couldn’t get her to sit or lie down at home. At least at school she sat at a desk for a few hours.

So what did we do? We reserved the right to make decisions as the need arose. We minimised risks while trying to maximise the goodness our daughter got from engaging with normal life. For months, we drove her to school rather than let her walk. And if we decided not to let her go, we took care to present it as a regretful necessity, not a punishment.

I thanked my lucky stars that I worked from home. This is a lot more complicated for some families. I hope you can find solutions that work for you.

‘Health promotion’ in schools: why, oh why?

I’ll try and keep this short or I fear it will turn into a rant.

Schools commonly have ‘healthy eating’ and exercising on their curriculum. Food is commonly labelled as ‘healthy’ or ‘junk’, ‘good’ or ‘bad’. Dietary fats are ‘bad’ and being fat is ‘bad’. In some areas, kids get weighed, and of course they all get into comparing each other. One clinician told me that ‘healthy eating’ messages in schools are the most common precipitating factor she sees among her patients.

Sure. I know people who put sugar in their tea and that’s exactly how they look.

In addition to ‘health promotion’ initiatives there are school programs that aim to prevent eating disorders. I am unhappy when the underlying message is that eating disorders result from some kind of conscious decision, or from societal pressures or poor body image. The big worry is the unintended effects: eating disorders can end up more stigmatised, the session can trigger anxiety and a decision to diet or over-exercise, and the information presented can serve as a how-to manual for youngsters who are already on the eating disorders route. Very few prevention programs have been shown to work. A couple do show promise, but only for older teens.[1]

My daughter has, over the years, been told that crisps and sweets are bad (by teachers who hand them out as rewards for good work). She’s had to keep a food diary, to read nutritional labels and to report on a week’s worth of dietary fat units. In science, she’s been shown body fat distribution on MRI scans, and even a video showing fat extracted from a woman having liposuction. I bet you have your own horror stories.

What are your options?

Education and campaigning. You could try to change what is taught (but that might require changes in government policy).

If teachers know your child is vulnerable they may warn you when a ‘health’ topic is due to come up, so she can go somewhere else.

If you hear of nonsense being taught in one class, you can stop it being repeated in other classes in the same year group.

Education after the event. I spoke to teachers after discovering that my daughter and her friends had been lined up in order of weight for a lesson on Excel charts.

Wait and see. When my child was told to keep a food diary, we both agreed I would ask for her to be excused. She got a bit tense when children compared each other’s intakes, but it passed just as I was preparing to intervene. The following year, another teacher requested a food diary. This time the pupils had to note where an ‘unhealthy’ food could be replaced by a ‘healthy’ one. I was spitting tacks, but my daughter turned it into a mischievous game by making the whole thing up.

After the liposuction video, I was glad my daughter could talk to me about it and come to her own very sensible conclusions. If she’d thrown a wobbly at dinner that evening, I would have gone back to the old ‘no choice’ regime of the earlier refeeding days.

The rubbish taught around health could be a form of exposure therapy. If you notice that your child can process all this without excessive suffering, be happy. She’ll be better equipped to deal with all the other pressures she’ll encounter in years to come.

School as a resource

My wish is for you to find that your school is as supportive as ours have been. I’ll tell you a little more about what we’ve experienced, as it may help you to make realistic requests.

Initially I found some of the staff rather cold and unsympathetic. Perhaps they were. These were the early days, before they’d been given training about the illness. Perhaps they were suffering from a lack of support: this soon changed when a new Head was appointed, a woman who took pride in supporting our daughter. Or perhaps we simply misread the signals coming from a couple of individuals. They were teachers, trying to look professional and competent in the midst of a dozen high-powered clinicians.

I realised that what I perceived as a lack of empathy was getting to me. I craved great teamwork, and for this I wanted everyone to understand us. I notice this in other parents now: if the school puts up obstacles, emotions run high.

We each have our styles. Mine was to hug everybody. As soon as any of these stern-looking women showed the slightest sign of melting, I’d burst with gratitude and give them tearful hugs. It’s not manipulation – I really meant it, and hey, it freed them up to act human. Soon, we were doing exemplary teamwork and hugging on a regular basis.

If you’re having trouble relating to school officials, you might like to try the tools of compassionate communication I offer in Chapter 13. The approach applies to any situation in which human beings are interacting.

Here are some of the ways in which the school helped us:

A support teacher was allocated to our case. She set up meetings and ensured information flowed.

Where I live, educational psychologists are allocated to state schools. The person overseeing my daughter’s case stayed discreet (the last thing my child wanted was one more therapist) but he coordinated, among other things, the transition from primary school to high school. He was also ready to provide a listening ear for my husband or me. One of his colleagues gave my daughter some one-to-one eye-movement desensitisation and reprocessing (EMDR) therapy at my request. Although this was unsuccessful, I was glad to have this rare resource, and it was free.

There were regular meetings with us parents, the school, the clinicians and the educational psychologist. We worked out how best to supervise my daughter’s meals. We discussed various opportunities for her to be given roles and responsibilities that would boost her self-confidence. We tried out various ideas to help her feel secure with girls whose jeers had, more than a year earlier, caused her to start dieting, and who at times continued to trigger huge distress in her. We were quite torn about whether it would be better to change schools, and the school’s willingness to try various measures made a huge difference.

Together we planned every detail of how to make it possible and safe for my daughter to go on a week-long school trip.

As my daughter and her friends prepared to move to the same high school, new teachers came on board to support the transition. When they allocated pupils to classes, they discreetly took account of our guesses about which girls my daughter would be happiest with and which would perpetuate her insecurities. As a result, nothing but good things came from her move to high school.

My daughter was increasingly well and wanted to get on with her life, so most of this work went on behind the scenes.

I’m full of gratitude for the actions of many individuals who together made a whole system work so very well. The two main reasons for the primary school’s success were, I believe, that staff members were well informed (thanks to our clinicians) and that the Head took an active interest. Without her lead, individuals might not have felt empowered to give us their time and to collaborate with us so openly.

My guess is that every single person who helped us along got a massive amount of pride, satisfaction and joy from their input. There was no shortage of hugs and tears on my daughter’s last day of primary school. If you ever hesitate to ask for the support you need, remember that what may initially seem like a burden to someone can become an opportunity for them to make a meaningful contribution.

Caution please (Disclaimer)

I’m a parent – not a clinician. This site is not a substitute for professional advice. Pay attention to your instincts, read widely, speak to other parents, and most importantly, keep your clinicians in the loop.